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Jason’s NMO Story – Advocacy and Awareness Saves Lives

Posted by: The Sumaira Foundation in Caregiver, NMO, Voices of NMO

Modern medicine in the United States was a complete failure. For six weeks, the hospitals, doctors, and many lab tests couldn’t piece a single clue together…

It was 2018, and my fiancé had been to the doctors multiple times and was turned away from the ER three separate times. She was told she had the flu yet no one in the house was catching it.

We were getting no answers no matter who we turned to. For six long weeks, I purposely tried to pick up whatever virus they said she had, but nothing worked. I drank from her cups, ate her food, and slept beside her. Nothing.

In 2016, she was diagnosed with “suspected multiple sclerosis.” They thought she had MS based on multiple lesions in her brain, clinical presentations, and family history. There just was not enough there for a full-blown diagnosis. When presenting to the ER with uncontrollable vomiting and nausea, I repeatedly asked if MS could be an issue. Every single time, they dismissed the question as if I didn’t know what I was talking about. 

At the final ER visit, they suggested a CT scan to see what was going on. I pulled out my phone and told them she needed an MRI because her symptoms were likely related to MS. They were reluctant to call someone on a Saturday to do the scan, but I pushed. By this time, she was not only having uncontrollable vomiting but losing her ability to walk. She needed help to get 15 feet from the bed to the bathroom without falling. 

I persisted.

I showed them the research I had done. I explained to the ER doctor that a CT would not reveal what they needed to see but that an MRI would be a superior diagnostic tool in this case. A radiologist performed a 90-minute MRI and she was immediately admitted to the hospital. Once admitted, they ran even more tests. She was ultimately diagnosed with seronegative neuromyelitis optica spectrum disorder (NMOSD), an MS-mimicking disease. She was started on high-dose steroid treatment, which did nothing to stop her attack from progressing. It wasn’t until she was transferred to another hospital for plasmapheresis that we started to see any improvement in her condition. 

Progress was slow, but it was still positive progress. 

Our experience shows how hard it is for someone dealing with a rare disease to get a proper diagnosis and appropriate treatment. While she was lucky the doctors did not put her on any MS preventatives that could exacerbate NMOSD, she did suffer unnecessarily for six weeks.

Her career halted when she came home, as she could no longer lift the children she cared for. It took two and a half years for social security to accept her disability and she could not collect unemployment because she was technically considered self-employed.

NMOSD affects the entire family- financially, emotionally, physically, and logistically. 

She could have fallen through the cracks if someone hadn’t advocated for her. Now she advocates for others so they don’t have to go through what we went through.

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